The Lymphedema community is mobilizing to reverse a new Medicare rule that is likely to result in a one-third to one-half reduction in the number of lymphedema therapists nationwide, and therefore a denial of treatment to many lymphedema patients, the majority of whom are breast cancer surgery survivors.

On May 6, the Office for Medicare and Medicaid Services in the U.S. Department of Health and Human Services issued a new rule that limits reimbursement for “therapy services” to certain medical providers, when the therapy is billed “incident to” the services of a physician or nonphysician practitioner. The providers include those trained as physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists. In addition, when state and local law permit, therapy services can be provided by physicians, physician assistants, clinical nurse specialists, and nurse practitioners.

Among the provider groups not included in this list are massage therapists. This means that doctors will not be able to continue billing for therapy services when they are provided by massage therapists. For many patients, this would not matter, but for lymphedema sufferers, it matters a great deal. “This ruling will be absolutely devastating for our patients,” said Cheri Hoskins, owner of a lymphedema practice and Chair of Lymphedema Stakeholders.

Because of the unusual way lymphedema therapy developed in the United States, manual lymphedema therapy is provided by a wide range of specialists, including doctors, nurses, PTs, OTs, physician assistants, and massage therapists. An estimated one-third to one-half of all lymphedema therapists nationwide are massage therapists, and in many parts of the country, the only lymphedema therapists within driving distance for patients are massage therapists.

In those areas, the new Medicare rule means that entire lymphedema practices will close. Already, two practices have been forced to close as physicians have anticipated the effect of the new rule – leaving literally hundreds of patients stranded without treatment – and other practices are making plans to close because they estimate they will only be able to afford to stay in business for a few months.

All lymphedema patients, not just those receiving Medicare benefits, will be hurt.

For patients, “the inevitable result of this rule will be a significant reduction in the number of lymphedema therapists, and therefore longer waiting periods to see the therapists who remain, less time available for treatment, and higher prices,” Hoskins said. “We already have an acute shortage of lymphedema therapists, and this will only make the situation worse.”

The new rule is a Further Clarification of Change Request 3648, Which Revised the Medicare Benefit Policy Manual (Pub 100-02), Chapter 15, Regarding Therapy Services. The rule takes effect on June 6.

Lymphedema is a progressive, chronic, debilitating and painful swelling of the arms, legs, and other parts of the body. It can affect women, men and children. If left untreated, of if treated only partially, it can progress to Stage 2 and then Stage 3, when a patient can become so immobilized that they cannot leave their homes, or even must be hospitalized. At all stages of the disease, severe infection is a constant danger.

Primary lymphedema has no known cause, can be inherited, and can appear during any stage of life. Secondary lymphedema may result from surgery, chemotherapy, radiation, infection, trauma or disease that impairs the lymphatic system. The largest percentage of victims are breast cancer survivors, whose lymphedema developed as a specific side effect of their cancer surgeries. Men can contract the disease after prostate, testicular and other cancers.

The mission of the Lymphedema Stakeholders PAC is to advance the quality of care for lymphedema patients, and to protect patients' rights to comprehensive lymphedema therapy from providers who meet standards established by the Lymphology Association of North America (www.clt-lana.org).

Who Are We? Lymphedema Stakeholders Political Action Committee is a non-profit organization (501C4) formed to protect the rights of all lymphedema patients.

Our Mission The mission of the Lymphedema Stakeholders PAC is to advance the quality of care for lymphedema patients, and to protect patients' rights to comprehensive lymphedema therapy from providers who meet standards established by the Lymphology Association of North America (LANA).

How You Can Help

You can help two ways -- both are needed immediately:

Grass Roots Efforts We are currently organizing a grass roots effort in all 50 states. If you are interested in helping with this matter, please e-mail us at the following address: info@legislation4lymphedema.org. We will need your name and address. We will provide you with guidelines, letters, etc. for your state. It is urgent that every state be represented and that every legislative representative be contacted in writing, in person, or by telephone as soon as possible. Let's all band together and get this decision reversed!